Identification of Key Themes Related to Quality of Life in Cleft - - PowerPoint PPT Presentation

Identification of Key Themes Related to Quality of Life in Cleft Lip and Palate Patients

Paymon Sanati-Mehrizy, Nathaniel Villanueva MD, Rebecca Wu, Donna Eckstein, Roscoe Wasserburg, Peter J Taub MD. Division of Plastic and Reconstructive Surgery, Department of Surgery Icahn School of Medicine at Mount Sinai Plastic Surgery The Meeting 2014

Disclosures Nothing to disclose

Introduction

§ Most outcome measures in CLP are

• bjective assessments

§ Limited subjective indicators of QoL in

CLP1

Stage 3: Evaluation of questionnaire for reliability, validity, and strength Stage 2: Field testing of questionnaire  revision and finalization of questionnaire Stage 1: Generation of a preliminary questionnaire from themes identified through focus groups and literature review + Pilot testing Stage 3: Evaluation of questionnaire for reliability, validity, and strength Stage 2: Field testing of questionnaire  revision and finalization of questionnaire Stage 1: Generation of a preliminary questionnaire from themes identified through focus groups and literature review + Pilot testing

Goal: Identify major themes implicated in the satisfaction

• f CLP patients and

parents Generate: Comprehensive, valid subjective questionnaire

Staged Development

Stage 3: Evaluation for Validity and Strength Stage 2: Field Testing  Revision and Finalization of Questionnaire Stage 1: Themes  Preliminary Questionnaire + Pilot Testing

Methods: conducting focus groups

§ Patients and their parents with cleft lip

and/or palate invited to discuss satisfaction/QoL

§ Moderator-conducted focus groups

• 60 minutes
• Audio-recorded
• Partially-structured

§ Audio recordings transcribed verbatim

and de-identified

Methods: data analysis2,3,4

Team-based reading to understanding themes Independent articulation of interviewee’s story Team-based creation of generalized concepts Transcript reading and verification of concepts Identification of preliminary codes Identification of trends of themes5

Discussion-based Software

Results

Five focus groups were conducted – 2 patient groups – 2 parent groups – 1 provider group

Six major themes (codes)

• 1. Communication &

Navigation of Care

• 2. Cosmesis
• 3. Financial Burden of

Medical Care

• 4. Functionality
• 5. Self-Esteem
• 6. Support Systems &

Social Adjustment

Results: frequency of themes

Communication/Navi gation Cosmesis Financial Burden Functionality Self-Esteem Support Syst./ Social Adjust. Totals Patient FG 1 10 5 3 7 13 41 Patient FG 2 6 8 1 3 4 22 Parent FG 1 6 3 2 11 Parent FG 2 10 8 3 8 5 6 44 Totals 32 21 3 15 15 25

Results: co-occurrence within text

"What's Most Important" Communication/N avigation Cosmesis Financial Burden Functionality Self-Esteem Support Syst./Social Adjust. Totals "What's Most Important” 4 3 3 4 14 Communication/Navigation 1 1 1 1 4 Cosmesis 4 1 7 6 18 Financial Burden 3 1 4 Functionality 1 2 3 Self-Esteem 3 1 7 1 3 15 Support Syst./Social Adjust. 4 1 6 2 3 16 Totals 14 4 18 4 3 15 16

I was five, and these little kids were saying they didn’t want to play with me because I had this big red line on my

• face. And I was like ‘I can’t help it!’

They really didn’t understand, and they kept on calling me ugly and just really bad names.

“

Discussion

Quality

• f Life

Communication & Navigation Functionality Support System and Social Adjustment Cosmesis Self-Esteem Financial Burden of Medical Care

Future Directions

§ Creation of a preliminary questionnaire

based on themes identified

§ Additional recruitment of patients and

parents for more focus groups

§ Focus groups with providers for

possible areas of discordance

§ Focus groups with non-native English

speakers

References

Eckstein DA, Wu RL, Akinbiyi T, Silver L, Taub PJ. Measuring quality of life in cleft lip and palate patients: currently available patient-reported outcomes measures. Plast Reconstr Surg. 2011; 128:518e-526e.

Dierckx de Casterle B, Gastmans C, Bryon E, Denier Y. QUAGOL: A guide for qualitative data analysis. Int J Nurs Stud. 2012; 49:360-371.

Ruddy KJ, Greaney ML, Sprunck-Harrild K, Meyer ME, Emmons KM, Partridge AH. Young Women with Breast Cancer: A Focus Group Study of Unmet Needs. J Adolesc Young Adult Oncol. 2013; 2(4): 153-160.

Cano SJ, Klassen A, Pusic AL. The Science behind Quality-of-Life Measurement: A Primer for Plastic Surgeons. Plast Reconstr Surg. 2009; 123:98e-106e.

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